Wednesday, February 29, 2012

Wednesday, February 29, 2012


Tonight's picture was taken in July of 2002. Mattie was three months old and getting baptized. Father Jim Greenfield baptized Mattie and he also presided over Mattie's funeral. I met Jim at the George Washington University. Jim was the head of the Newman Center at the time and I paid him a visit one day when I was looking for my very first client to counsel for a course assignment. Jim is not only a gifted priest but a wonderful counseling professional. Jim was an outstanding supervisor to me and even after I finished counseling his parishioner, we stayed connected. Jim gave Peter and I precana, which is a process couples must complete in order to get married in the Catholic church. So after I gave birth to Mattie, Jim was the natural choice for us to turn to for spiritual guidance. Jim held a private baptism for Mattie and I love this picture that I snapped that day. What the picture illustrated was Jim telling our friends and family that Mattie was the FIRST child he ever baptized who smiled and laughed when holy water was poured on his head. You can see Jim holding up one finger to make his point. You can also see Peter, my brother-in-law, and sister-in-law in the background smiling as a result of Mattie's very cute response.


Quote of the day: We don't see things as they are, we see them as we are. ~ Anais Nin

I think there is a great deal of truth in this statement. It is impossible to interpret others and the world around us independently from our own lens. Into each interaction we carry our own experiences, perspective, and at times baggage. Therefore, it is easy to read into things that may not even be there. I no longer look at the world in a naive way, instead I view life as finite, each day fleeting, and am very aware of parents suffering daily while caring for sick children or children with profound disabilities.

I want my readers to know that today is Worldwide Rare Disease Day. It is always recognized on the last day in February. In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.

Due to Mattie's unique form of Osteosarcoma, he was considered to have a rare disease. Though this campaign doesn't address cancer per se, it does advocate for the needs of children and their families battling life threatening conditions, something that I am very familiar with. It is quite possible that many of my readers have never heard of this rare disease movement in the US, so I attached a link below about the day and also a very short promotional video which was very profound since it uses very few words.  
http://rarediseaseday.us/

Rare Disease Day Video
http://www.rarediseaseday.org/solidarity


Despite it raining non-stop today, I got out and about. Ann and I went shopping together, which in many ways was reminiscent of our early days together after Mattie just died. Shopping seemed to be a distraction for both of us. However, this store wasn't prepared for either of us and clearly we made the store clerk jumpy. When she began to tell me that she knew how to put colors together better than I did, I had to bite my tongue, which isn't easy now since I am sleep deprived and have a short fuse.

In the afternoon, I had lunch with my friend Heidi and her daughter Isabel. Isabel's Girl Scout troop is the one working closely with Mattie Miracle this spring. Isabel developed her own craft idea for raising money at this year's Foundation Walk. I very much appreciate her initiative and commitment to our cause. I do not spend much time around 14 year old girls, but there were aspects of Isabel today that reminded me of myself at her age. My experience raising a child ends at age 7. So in a way from a parental perspective my skills are stunted, but I enjoyed hearing about Isabel's science fair (she chose a behavioral science experiment, so I could relate to this wholeheartedly) and learning about her interests. One of the conversations at lunch which I found very stimulating was our discussion on volunteerism.

When I was growing up, teens volunteered. For example, I earned several hundred hours in high school working with older adults in hospital geriatric units. I did not do this for school credit, I did not do this for a school assignment, I did not do this to get featured in an article, and I did not do it for any tangible product or outcome. I did it because in a way helping people was an expectation of me, maybe set by my family and my community. Now, how often do you see a teenager decide to volunteer to do something without having an incentive? In all fairness, a great deal of our kids today are over programmed and even if they wanted to volunteer, they neither have the time to do this or are given the opportunity to even explore what interests them enough to delve into an activity. That to me is a sad commentary. Instead, we have moved away from volunteerism and adopted the term service learning. Having worked in an university system that embraced service learning, I am very well versed in its notion. From an academic standpoint, there is no finer way to learn a skill than to be educated about a topic didactically in a classroom and then apply this knowledge within the community (in a real life setting). However, service learning has become so commonplace even in high schools, that in so many ways it has become just like another course, another hurdle to jump over, and another task to complete. A task nonetheless that comes with usually a grade (an incentive).

When did volunteering and helping others become an  educational course? It seems to me we have really lost something as a society and our educational system in a way is teaching students that there is a deep connection between helping others and getting an extrinsic reward (grades, courses, recognitions on college applications). Instead, the beauty of volunteerism is it should help develop a more rounded and grounded individual who can experience the joy of intrinsic rewards and feedback (feeling good about what one has done, connecting with another human being, helping and making even a small difference in a community or in someone else's life). Children and teens have the ability to self-regulate and can make the right choices if given the opportunity and freedom to get in touch with their interests and passions. At the end of the day, life is not about one's grades. I can assure you that getting all straight A's doesn't make you any more prepared for life's harsh realities, instead, it is the inner resources and passions one develops as a child that sets the foundation for a better and stronger tomorrow.